NEW! Covid-19 and Mental Health
Trauma and Covid-19: Communities In Need Across The US
Prevalence Of Depression Symptoms In Us Adults Before And During Covid-19 Pandemic
Bleeding Disorders
The relationship of self-compassion and hope with quality of life for individuals with bleeding disorders
Klein, Darci E., Carrie L. Winterowd, Meredith D. Ehrhardt, Jenny Carrick Carter, Osman Khan, and Sunnye Mayes. 2020. “The Relationship Of Self‐Compassion And Hope With Quality Of Life For Individuals With Bleeding Disorders”. Haemophilia. doi:10.1111/hae.13959.
Psychosocial aspects of haemophilia: a systematic review of the methodologies and findings
Cassie, F.R.M.Y., F. Querol, A. Forsyth, and A. Iorios. 2012. “Psychosocial Aspects Of Haemophilia: A Systematic Review Of Methodologies And Findings”. Haemophilia, no. 18: e101-e114. doi:10.111/j.1365-2516.2011.02683.x.
https://onlinelibrary.wiley.com/doi/abs/10.1111/j.1365-2516.2011.02683.x
Management of US men, women, and children with hemophilia and methods and demographics of the Bridging Hemophilia B Experiences, Results and Opportunities into Solutions (B‐HERO‐S) study
Buckner, Tyler W., Michelle Witkop, Christine Guelcher, Mary Jane Frey, Susan Hunter, Skye Peltier, and Michael Recht et al. 2017. “Management Of US Men, Women, And Children With Hemophilia And Methods And Demographics Of The Bridging Hemophilia B Experiences, Results And Opportunities Into Solutions (B-HERO-S) Study”. European Journal Of Haematology 98: 5-17. doi:10.1111/ejh.12854.
Interrelationship between depression, anxiety, pain, and treatment adherence in hemophilia: results from a US cross-sectional survey
Witkop, Michelle L., Angela Lambing, Cynthia D. Nichols, James E. Munn, Terry L. Anderson, and Bartholomew J. Tortella. 2019. “Interrelationship Between Depression, Anxiety, Pain, And Treatment Adherence In Hemophilia: Results From A US Cross-Sectional
Survey”. Patient Preference And Adherence Volume 13: 1577-1587. doi:10.2147/ppa.s212723.
Physician trust and depression influence adherence to factor replacement: a single centre cross‐sectional study
Tran, D. Q., V. Barry, A. Antun, M. Ribeiro, S. Stein, and C. L. Kempton. 2016. “Physician Trust And Depression Influence Adherence To Factor Replacement: A Single-Centre Cross-Sectional Study”. Haemophilia 23 (1): 98-104. doi:10.1111/hae.13078.
What can we learn from using formal patient- reported outcome instruments to assess pain, functional impairment, anxiety, and depression in US adults with hemophilia?
Buckner, Tyler W., Katharine Batt, David L. Cooper, and Christine L. Kempton. 2018. “What Can We Learn From Using Formal Patient-Reported Outcome Instruments To Assess Pain, Functional Impairment, Anxiety, And Depression In US Adults With Hemophilia?”. European Journal Of Haematology 100: 3-4. doi:10.1111/ejh.13026.
https://www.onlinelibrary.wiley.com/doi/epdf/10.1111/ejh.13026
Disease-related distress among adults with hemophilia: A qualitative study
Mattis, Shanna, Vaughn Barry, Natalie Taylor, Mary Ellen Lynch, Katharine Tatum, Stephanie Whitten, and Christine L. Kempton. 2019. “Disease‐Related Distress Among Adults With Haemophilia: A Qualitative Study”. Haemophilia 25 (6): 988-995. doi:10.1111/hae.13850.
From the voices of people with haemophilia A and their caregivers: Challenges with current treatment, their impact on quality of life and desired improvements in future therapies
Wiley, Ryan E., Charles P. Khoury, Adrian W. K. Snihur, Marni Williams, David Page, Nicole Graham, Lori Laudenbach, Cindy Milne‐Wren, and Jayson M. Stoffman. 2019. “From The Voices Of People With Haemophilia A And Their Caregivers: Challenges With Current Treatment, Their Impact On Quality Of Life And Desired Improvements In Future Therapies”. Haemophilia 25 (3): 433-440. doi:10.1111/hae.13754.
Predictor of quality of life among adolescents and young adults with a bleeding disorder
McLaughlin, John M., James E. Munn, Terry L. Anderson, Angela Lambing, Bartholomew Tortella, and Michelle L. Witkop. 2017. “Predictors Of Quality Of Life Among Adolescents And Young Adults With A Bleeding Disorder”. Health And Quality Of Life Outcomes 15 (1). doi:10.1186/s12955-017-0643-7.
Perceived well-being and mental health in haemophilia
Negri, Luca, Andrea Buzzi, Anna Brigida Aru, Antonino Cannavò, Claudio Castegnaro, Maria Rosaria Fasulo, and Giuseppe Lassandro et al. 2020. “Perceived Well-Being And Mental Health In Haemophilia”. Psychology, Health & Medicine, 1-11. doi:10.1080/13548506.2020.1717556.
https://www.tandfonline.com/doi/full/10.1080/13548506.2020.1717556
Children with Hemophilia
Neuropsychological function in children with hemophilia: A review of the Hemophilia Growth and Development Study and introduction of the current eTHINK study
Buranahirun, Cathy, Karin S. Walsh, Christine Mrakotsky, Stacy E. Croteau, Madhvi Rajpurkar, Susan Kearney, Cara Hannemann, Greta N. Wilkening, Kevin A. Shapiro, and David L. Cooper. 2019. “Neuropsychological Function In Children With Hemophilia: A Review Of The Hemophilia Growth And Development Study And Introduction Of The Current Ethink Study”. Pediatric Blood & Cancer 67 (1). doi:10.1002/pbc.28004
Male gender, school attendance and sports participation are positively associated with health-related quality of life in children and adolescents with congenital bleeding disorders
Limperg, P. F., M. M. H. Joosten, K. Fijnvandraat, M. Peters, M. A. Grootenhuis, and L. Haverman. 2018. “Male Gender, School Attendance And Sports Participation Are Positively Associated With Health-Related Quality Of Life In Children And Adolescents With Congenital Bleeding Disorders”. Haemophilia 24 (3): 395-404. doi:10.1111/hae.13420.
Quality of life in haemophilia A: Hemophilia Utilization Study Va (HUGS-Va)
POON, J.-L., Z.-Y. ZHOU, J. N. DOCTOR, J. WU, M. M. ULLMAN, C. ROSS, and B. RISKE et al. 2012. “Quality Of Life In Haemophilia A: Hemophilia Utilization Group Study Va (HUGSVa)”. Haemophilia 18 (5): 699-707. doi:10.1111/j.1365-2516.2012.02791.x.
https://onlinelibrary.wiley.com/doi/full/10.1111/j.1365-2516.2012.02791.x
Female with Bleeding Disorders
The long‐term psychological management of women and girls with inherited bleeding disorders
DUNN, N. F. 2011. “The Long-Term Psychological Management Of Women And Girls With Inherited Bleeding Disorders”. Haemophilia 17: 38-41. doi:10.1111/j.1365-2516.2011.02564.x.
Women with bleeding disorders
Hermans, C., and R. Kulkarni. 2018. “Women With Bleeding Disorders”. Haemophilia 24: 29-36. doi:10.1111/hae.13502.
Association between bleeding tendency and health‐related quality of life in carriers of moderate and severe haemophilia
Olsson, A., M. Hellgren, E. Berntorp, and F. Baghaei. 2015. “Association Between Bleeding Tendency And Health-Related Quality Of Life In Carriers Of Moderate And Severe Haemophilia”. Haemophilia 21 (6): 742-746. doi:10.1111/hae.12796.
Association between bleeding tendency and health‐related quality of life in carriers of moderate and severe haemophilia
Olsson, A., M. Hellgren, E. Berntorp, and F. Baghaei. 2015. “Association Between Bleeding Tendency And Health-Related Quality Of Life In Carriers Of Moderate And Severe Haemophilia”. Haemophilia 21 (6): 742-746. doi:10.1111/hae.12796.
von Willebrand
Joint bleeds in von Willebrand disease patients have significant impact on quality of life and joint integrity: A cross-sectional study
van Galen, K. P. M., Y. V. Sanders, U. Vojinovic, J. Eikenboom, M. H. Cnossen, R. E. G. Schutgens, and J. G. van der Bom et al. 2015. “Joint Bleeds In Von Willebrand Disease Patients Have Significant Impact On Quality Of Life And Joint Integrity: A Cross-Sectional Study”. Haemophilia 21 (3): e185-e192. doi:10.1111/hae.12670.
Medical, reproductive and psychosocial experiences of women diagnosed with von Willebrand’s disease receiving care in Haemophilia Treatment Centers – A case control study
Kirtava, A., C. Drews, C. Lally, A. Dilley, and B. Evatt. 2003. “Medical, Reproductive And Psychosocial Experiences Of Women Diagnosed With Von Willebrand’s Disease Receiving Care In Haemophilia Treatment Centres: A Case-Control Study”. Haemophilia 9 (3): 292-297. doi:10.1046/j.1365-2516.2003.00756.x.
https://onlinelibrary.wiley.com/doi/pdf/10.1046/j.1365-2516.2003.00756.x
Inhibitors
Impact of haemophilia with inhibitors on caregiver burden
DeKoven, M., Karkare, S., Lee, W., Kelley, L., Cooper, D., Pham, H., Powers, J. and Wisniewski, T. (2014).” Impact of haemophilia with inhibitors on caregiver burden in the United States”. Haemophilia, 20(6), pp.822-830.
Chronic Conditions
Depression, anxiety and their relationship with chronic diseases: a review of the epidemiology, risk and treatment evidence
D Clarke, K. Currie (2009). Medical Journal of Australia, MJA 2009; 190: S54–S60
https://www.mja.com.au/system/files/issues/190_07_060409/cla10974_fm.pdf
Chronic Pain
Opioid Exposure in Haemophilia Patients is Common and Underreported
Peltier, Skye J., Marshall A. Mazepa, Rebecca L. Freese, Shannon F. Nelson, Susan L. Kearney, and Mark T. Reding. 2020. “Opioid Exposure In Haemophilia Patients Is Common And Underreported”. Haemophilia. doi:10.1111/hae.13950.
A review of evidence about behavioral and psychological aspects of chronic pain among people with hemophilia
Elander, J. 2013. “A Review Of Evidence About Behavioural And Psychological Aspects Of Chronic Joint Pain Among People With Haemophilia”. Haemophilia 20 (2): 168-175. doi:10.1111/hae.12291.
Patient-reported outcomes and joint status across subgroups of US adults with hemophilia with varying characteristics: Results from the pain, functional impairment, and quality of life (P-FiQ) study
Buckner, Tyler W., Katharine Batt, Doris Quon, Michelle Witkop, Michael Recht, Craig Kessler, and Kimberly Baumann et al. 2018. “Assessments Of Pain, Functional Impairment, Anxiety, And Depression In US Adults With Hemophilia Across Patient-Reported Outcome Instruments In The Pain, Functional Impairment, And Quality Of Life (P-Fiq) Study”. European Journal Of Haematology 100: 5-13. doi:10.1111/ejh.13027.
Posttraumatic stress disorder and chronic pain are associated with opioid use disorder: Results from a 2012-2013 American nationally representative survey
Bilevicius, Elena, Jordana L. Sommer, Gordon J.G. Asmundson, and Renée El-Gabalawy. 2018. “Posttraumatic Stress Disorder And Chronic Pain Are Associated With Opioid Use Disorder: Results From A 2012-2013 American Nationally Representative Survey”. Drug And Alcohol Dependence 188: 119-125. doi:10.1016/j.drugalcdep.2018.04.005.
Chronic pain and suicide risk: A comprehensive review
Racine, Mélanie. 2018. “Chronic Pain And Suicide Risk: A Comprehensive Review”. Progress In Neuro-Psychopharmacology And Biological Psychiatry 87: 269-280. doi:10.1016/j.pnpbp.2017.08.020.
https://www.sciencedirect.com/science/article/pii/S0278584617304670
Racial differences in chronic pain and quality of life among adolescents and young adults with moderate or severe hemophilia
McLaughlin, John M., Angela Lambing, Michelle L. Witkop, Terry L. Anderson, James Munn, and Bartholomew Tortella. 2015. “Racial Differences In Chronic Pain And Quality Of Life Among Adolescents And Young Adults With Moderate Or Severe Hemophilia”. Journal Of Racial And Ethnic Health Disparities 3 (1): 11-20. doi:10.1007/s40615-015-0107-x.
Stress
The United States of Stress
Slade, Maureen, and MD Allison Young. 2019. “The United States Of Stress 2019”. Everydayhealth.Com.
https://www.everydayhealth.com/wellness/united-states-of-stress
Uncovering the link between emotional stress and heart disease
Publishing, Harvard. 2017. “Uncovering The Link Between Emotional Stress And Heart Disease – Harvard Health”. Harvard Health.
Adults with Bleeding Disorders
Prevalence of depression in adults with hemophilia
Iannone, M., L. Pennick, A. Tom, H. Cui, M. Gilbert, K. Weihs, and A. T. Stopeck. 2012. “Prevalence Of Depression In Adults With Haemophilia”. Haemophilia 18 (6): 868-874. doi:10.1111/j.1365-2516.2012.02863.x.
Multiple Comorbid Conditions among Middle-Aged and Elderly Hemophilia Patients: Prevalence Estimates and Implications for Future Care.
Khleif, Aroub A., Nidra Rodriguez, Deborah Brown, and Miguel A. Escobar. 2011. “Multiple Comorbid Conditions Among Middle-Aged And Elderly Hemophilia Patients: Prevalence Estimates And Implications For Future Care”. Journal Of Aging Research 2011: 1-8. doi:10.4061/2011/985703.
Emotional distress in haemophilia: Factors associated with the presence of anxiety and depression symptoms among adults
Pinto, P., Paredes, A., Moreira, P., Fernandes, S., Lopes, M., Carvalho, M. and Almeida, A. (2018).” Emotional distress in haemophilia: Factors associated with the presence of anxiety and depression symptoms among adults.” Haemophilia, 24(5), pp.e344-e353.
Young adults with hemophilia in the U.S.: demographics, comorbidities, and health status
Curtis, Randall, Judith Baker, Brenda Riske, Megan Ullman, Xiaoli Niu, Kristi Norton, Mimi Lou, and Michael B. Nichol. 2015. “Young Adults With Hemophilia In The U.S.: Demographics, Comorbidities, And Health Status”. American Journal Of Hematology 90: S11-S16. doi:10.1002/ajh.24218.
Unmet needs in the transition to adulthood 18 to 30 year old people with hemophilia
Quon, Doris, Mark Reding, Chris Guelcher, Skye Peltier, Michelle Witkop, Susan Cutter, and Cathy Buranahirun et al. 2015. “Unmet Needs In The Transition To Adulthood: 18- To 30-Year-Old People With Hemophilia”. American Journal Of Hematology 90: S17-S22. doi:10.1002/ajh.24219.
Health-related quality of life, developmental milestones, and self-esteem in young adults with bleeding disorders
Limperg, P. F., L. Haverman, H. Maurice-Stam, M. Coppens, C. Valk, M. J. H. A. Kruip, J. Eikenboom, M. Peters, and M. A. Grootenhuis. 2017. “Health-Related Quality Of Life, Developmental Milestones, And Self-Esteem In Young Adults With Bleeding Disorders”. Quality Of Life Research 27 (1): 159-171. doi:10.1007/s11136-017-1696-0.
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